There are many ways that people with epilepsy and their families can help with research on this disorder. Pregnant women with epilepsy who are taking antiepileptic drugs can help researchers learn how these drugs affect unborn children by participating in the Antiepileptic Drug Pregnancy Registry, which is maintained by the Genetics and Teratology Unit of Massachusetts General Hospital (see section on Pregnancy and Motherhood). People with epilepsy that may be hereditary can aid research by participating in the Epilepsy Gene Discovery Project, which is supported by the Epilepsy Foundation. This project helps to educate people with epilepsy about new genetic research on the disorder and enlists families with hereditary epilepsy for participation in gene research. People who enroll in this project are asked to create a family tree showing which people in their family have or have had epilepsy. Researchers then examine this information to determine if the epilepsy is in fact hereditary, and they may invite participants to enroll in genetic research studies. In many cases, identifying the gene defect responsible for epilepsy in an individual family leads researchers to new clues about how epilepsy develops. It also can provide opportunities for early diagnosis and genetic screening of individuals in the family.
People with epilepsy can help researchers test new medications, surgical techniques, and other treatments by enrolling in clinical trials. Information on clinical trials can be obtained from the NINDS as well as many private pharmaceutical and biotech companies, universities, and other organizations. A person who wishes to participate in a clinical trial must ask his or her regular physician to refer him or her to the doctor in charge of that trial and to forward all necessary medical records. While experimental therapies may benefit those who participate in clinical trials, patients and their families should remember that all clinical trials also involve some risks. Therapies being tested in clinical trials may not work, and in some cases doctors may not yet be sure that the therapies are safe. Patients should be certain they understand the risks before agreeing to participate in a clinical trial.
Patients and their families also can help epilepsy research by donating their brain to a brain bank after death. Brain banks supply researchers with tissue they can use to study epilepsy and other disorders. Below are some brain banks that accept tissue from patients with epilepsy:
Brain and Tissue Bank for Developmental Disorders University of Maryland 655 West Baltimore Street, Room 10-035 BRB Baltimore, MD 21201-1559 800-847-1539 E-mail: btbumab@umaryland.edu http://medschool.umaryland.edu/BTBank/ (tissue from children only)
Brain and Tissue Bank for Developmental Disorders University of Miami Department of
Pathology, R-5 Papanicolaou Building, Room 410 Miami, FL 33136 800-59BRAIN (592-7246) E-mail: btb@med.miami.edu
(tissue from adults only)
Brain Endowment Bank University of Miami 1501 NW Ninth Avenue, Suite #4013 Miami, FL 33136 305-243-6219 800-UM-BRAIN (862-7246)
National Disease Research Interchange 8 Penn Center, 8th Floor Philadelphia, PA 19103 215-557-7361 800-222-NDRI (6374) E-mail: htor@ndri.com www.ndri.com
Human Brain and Spinal Fluid Resource Center Neurology Research (127A) W. Los Angeles Healthcare Center 11301 Wilshire Boulevard Los Angeles, CA 90073 310-268-3536 Page: 310-636-5199 E-mail: RMNbbank@ucla.edu www.loni.ucla.edu/~nnrsb/NNRSB
A brain tumor can be either benign (non cancerous) or malignant (cancerous), primary, or secondary. Causes and risk factors include age, gender, family history, and exposure to chemicals. Symptoms range from headaches, leg and feet numbness to seizures. Treatment is dependant upon the type and location of the brain tumor.
A stroke results from impaired oxygen delivery to brain cells via the bloodstream. A stroke is also referred to as a CVA, or cerebrovascular incident. Symptoms of stroke include: sudden numbness or weakness of the face, arm or leg. Sudden confusion, trouble speaking or understanding. Sudden trouble seeing in one or both eyes, sudden trouble walking, dizziness, or loss of balance, and/or sudden severe headache with no known cause. A TIA, or transient ischemic attack is a short-lived temporary impairment of the brain caused by loss of blood supply. Stroke is a medical emergency.
Systemic lupus erythematosus is a condition characterized by chronic inflammation of body tissues caused by autoimmune disease. Lupus can cause disease of the skin, heart, lungs, kidneys, joints, and nervous
system. When only the skin is involved, the condition is called discoid lupus.
When internal organs are involved, the condition is called systemic lupus
erythematosus (SLE).
Stress occurs when forces from the outside world impinge on the individual. Stress is a normal part of life. However, over-stress, can be harmful. There is now speculation, as well as some evidence, that points to the abnormal stress responses as being involved in causing various diseases or conditions.
Heart attack happens when a blood clot completely obstructs a coronary
artery supplying blood to the heart muscle. A heart attack can cause chest pain, heart failure, and electrical
instability of the heart.
Hypoglycemia is a syndrome caused by low blood sugar. Symptoms of hypoglycemia include palpitations, trembling, intense hunger, sweating, nervousness, and weakness. Consuming lifesavers, table sugar, soda, and juice are good treatment options for hypoglycemia.
Alcoholism is a disease that includes alcohol craving and continued drinking despite repeated alcohol-related problems, such as losing a job or getting into trouble with the law.
Group B strep are bacteria called Streptococcus agalactiae that may sometimes cause infections both in a pregnant woman and her newborn. Symptoms include fever, seizures, heart rate abnormalities, breathing problems, and fussiness. Intravenous antibiotics are used to treat group B strep infections.
Whooping cough (pertussis) is highly contagious respiratory infection that is caused by the bacteria Bordetella pertussis. There are an estimated 300,000 plus deaths annually from whooping cough (pertussis). Whopping cough commonly affects infants and young children, but can be prevented with immunization with the vaccine. First stage whooping cough symptoms are a runny nose, sneezing, low-grade fever, a mild cough with the cough gradually becoming more severe. After one to two weeks, the second stage of whooping cough begins.
Malaria is an infectious disease transmitted by the bite of an infected Anopheles mosquito. Symptoms of malaria include chills, pain, fever, and sweating. Though mild cases of malaria can be treated with oral medication, severe cases require intravenous drug treatment and fluids.
Rhabdomyolysis is a rapid deterioration and destruction of skeletal muscle. Some of the causes of rhabdomyolysis include severe burns, muscle trauma, coma, seizures, electrolyte imbalance, medications (statins), viruses, bacteria. Treatment of rhabdomyolysis depends on the cause.
Hydrocephalus is an abnormal buildup of cerebrospinal fluid (CSF) in the ventricles of the brain. The fluid is often under increased pressure and can compress and damage the brain. Symptoms of hydrocephalus vary with age, progression of the disease, and individual tolerance to the condition. Hydrocephalus is most often treated by surgery in which a shunt system is inserted.
Huntington's disease is the result of degeneration of neurons in areas of the brain. Huntington's disease is an inherited disorder. Early symptoms include mood swings, apathy, depression, and anger uncharacteristic of the individual. Judgement, memory, and other cognitive functions may become impaired. Presymptomatic testing is available for individuals who have a family history of Huntington's disease. Treatment includes medication and therapy for symptoms.
Pulmonary edema (swelling or fluid in the lungs) can either be caused by cardiogenic causes (congestive heart failure, heart attacks, abnormal heart valves) or noncardiogenic causes such as ARDS, kidney failure, high altitude, pneumothorax, pleural effusion, aspirin overdose, pulmonary embolism, and infections. The treatment of pulmonary edema depends on the cause of the condition.
Encephalopathy means brain disease, damage, or malfunction. Causes of encephalopathy are varied and numerous. The main symptom of encephalopathy is an altered mental state. Other symptoms include lethargy, dementia, seizures, tremors, and coma. Treatment of encephalopathy depends on the type of encephalopathy (anoxia, diabetic, Hashimoto's, hepatic, hyper - hypotensive, infectious, metabolic, infections, uremic, or Wernicke's) are examples of types of encephalopathy.
A number of vital tasks carried out during sleep help maintain good health and enable people to function at their best. Sleep needs vary from individual to individual and change throughout your life. Not getting enough sleep can hurt memory performance, health, and your mood.
Concussion is a short-lived loss of brain function that is due to head trauma. There are two types of concussion, simple and complex. Symptoms of concussion include headache, nausea, dizziness, dazed feeling, irritability, visual symptoms. Physical signs include poor concentration, emotional changes, slurred speech, and personality changes. Concussion is diagnosed with physical examination and testing. Treatment for concussion in general are treatment for control of the symptoms, and time.
Smoking is an addiction. More than 430,000 deaths occur each year in the U.S. from smoking related illnesses. Secondhand smoke or "passive smoke" also harm family members, coworkers, and others around smokers. There are a number of techniques available to assist people who want to quit smoking.
Listeria is a type of bacteria that can cause food poisoning. Listeriosis symptoms include diarrhea, nausea and fever. Pregnant women are 20 times more likely than other healthy adults to get listeriosis. Listeria infection is treated with antibiotics.
Cancers that form from brain tissue are called primary brain tumors. Brain tumors may be malignant (brain cancer) or benign. Certain risk factors, such as working in an oil refinery, as a chemist, or embalmer, increase the likelihood of developing brain cancer. Symptoms include headaches, weakness, seizures, difficulty walking, blurry vision, nausea and vomiting, and changes in speech, memory, or personality. Treatment may involve surgery, radiation therapy, or chemotherapy.
Toxoplasmosis (toxo) is a parasitic infection that causes flulike symptoms, swollen lymph nodes, and muscle aches and pains that may last from a few days to several weeks. Toxoplasmosis can be contracted by touching the hands to the mouth after gardening, cleaning a cat's litter box, or anything that came into contact with cat feces. Toxoplasmosis can also be contracted by eating raw or partly cooked meat, especially pork or lamb, or touching the hands to the mouth after contact with raw or undercooked meat.
Cerebral palsy (CP) is an abnormality of motor function and postural tone acquired at an early age (even before birth). Cerebral palsy is generally caused by brain trauma. Types of cerebral palsy include: spastic, choreoathetoid, and hypotonic. There is no cure for cerebral palsy, and treatment is generally managing the symptoms of the condition.
Encephalitis is a brain inflammation that causes sudden fever, vomiting, headache, light sensitivity, stiff neck and back, drowsiness, and irritability. Meningitis is an infection that causes inflammation of the meninges that surround the brain and spinal cord. Symptoms of meningitis include high fever, headache, nausea, vomiting, and stiff neck.
Coma is the inability to waken or react to the surrounding environment. The Glasgow Coma Scale is frequently used to measure the depth of coma. Causes of coma include trauma, bleeding, edema, lack of oxygen, poisoning, or hypoglycemia. Prognosis for a patient in a coma depends on the cause of the coma.
Autism in children and adults is a developmental disorder, characterized by impaired development in communication, social interaction, and behavior. Autism is classified as a pervasive developmental disorder (PDD), which is part of a broad spectrum of developmental disorders affecting young children and adults. There are numerous theories and studies about the cause of autism. The treatment model for autism is an educational program that is suitable to an individual's developmental level of performance. There is no "cure" for autism.
A brain hemorrhage is a type of stroke caused when an artery bursts in the brain, causing localized bleeding in the surrounding tissue. Causes of brain hemorrhage include aneurysm, liver disease, brain tumor, head trauma, high blood pressure, and blood vessel abnormalities. Symptoms include sudden severe headache, nausea, vomiting, loss of balance, tingling, numbness, vision changes, loss of consciousness, and loss of fine motor skills. Treatment depends upon the cause, location, and size of the brain hemorrhage.
In the United States, head injuries are one of the most common causes of death and disability. Head injuries due to bleeding are generally classified by the location of the blood within the scull, these include: epidural hematoma, subdural hematoma, subarachnoid bleed, intracranial bleed, sheer injury, edema, and skull fracture. Some common symptoms of a head injury include: vomiting, bleeding from the ear, speech difficulties, paralysis, difficulty swallowing, and body numbness. Treatment of a head injury depends on the type and severity of the injury.
Novel H1N1 influenza A virus infection (swine flu) is an infection that generally is transferred from an infected pig to a human, however there have been reported cases where infection has occured with no contact with infected pigs. Symptoms of swine flu are "flu-like" and include fever, cough, and sore throat. Treatment is generally with the antibiotics oseltamivir (Tamiflu) or zanamivir (Relenza).
Trichinosis is a food-borne disease caused by ingesting parasites (roundworms) in undercooked pork or wild-game meat. Symptoms of trichinosis include diarrhea, nausea, muscle aches, itching, fever, chills, and joint pains. Trichinosis usually resolves without treatment, but more severe cases are treated with thiabendazole, albendazole, or mebendazole.
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